Can't get warm

[horsie63]

In dialysis today I had them raise the temp on the machine from 36 to 37 as I was so cold. When I got in the car to drive home I turned the temp all the way up. I have sweatpants on, 2 shirts and a hoodie with a light jacket and a blanket on my legs. I'm drinking a cup of coffee and still can not stop shaking. The temp in the house is 73 and I'm sitting where there is carpet.

My BP is 147/83 so it's not low so I don't know why I can't get warm. Doesn't help that I have a headache.

EDIT: I made some buttered noodles and ate them hot. That helped with both the headache and freezing.

Normally I don't get so cold that I shiver and can't stop. I ate my cereal like I always do and I wasn't hungry. I covered up with my blankets, turned the chair heater on and had them turn the temp on the machine to 36 like always. I doubt my broken fistula is the cause but that's the only thing different.

Speaking of that one of the neph's came around, felt my dead fistula and listened to it. He said if I haven't had a call by Thur to call the vascular surgeon. I still have no idea why they called my dialysis center.

[RonZone]

Dang, you simply cannot get a break. I sure hope they can get your fistula fixed! As for the cold, don't guess they would allow you to have an electric blanket while sitting in the chair??? Don't remember anyone else saying they did that. Would they let you bring a thermos of hot soup to sip on during treatment? Or is that a no-no adding fluids during treatment? I still have occasion where I get the shakes, but after 15-20 minutes or so it finally goes away, then sometimes with all my blankets I sleep under, I actually get a bit hot. Go figure. I think my thermostat is busted.

[horsie63 in reply to RonZone]

I used to have a rechargeable heated blanket but it died ad I have not found another. I have seen people with thermos so I guess I could. They still take no fluid off me so I'll see about getting a thermos. Most of the time it hasn't been a problem but today was different for some reason. Normally when I first get home I eat my noodles but I was out so had to cook some more up.

Every day is an adventure.

[RonZone in reply to horsie63]

Yeah, something to consider, warm from the inside out I have to say, dialysis has brought on all kinds of "life changes" that I never expected and I just feel "different" on dialysis than I did before. Hard to explain that feeling. Not that I feel bad, but I know i don't get a full restful nights sleep since I'm aware of having to make sure I'm in a certain position when sleeping to keep my cycler "Amy" happy. And the process of setting everything up is not routine, but it creates a "different" life, for sure. So even though I'm very much used to it now, and I've been doing it over a year, I still feel like I'm living a "different" life. Something in me knows it's not normal. And then you have the cramping and chills and other stuff all throwing on top, not to mention the constipation from the phosphorus blockers, it does make life "different" if you know what I mean. I think out bodies like to let us know that this is just a plain weird thing to be doing, and it acts out in a variety of ways. So I guess what you're experiencing is part of that "new normal" unless you discover there really is something out of whack. Keep us posted what you discover.

[horsie63 in reply to RonZone]

I certainly know what you mean. As weird as the catheter is the fistula is weirder. And all of these surgeries are getting old. I don't know how some people do dialysis for years. I did 6 months on PD and now I'm at 6 months of hemo and counting. I think the transplant when it happens will be another weird thing.

I'm just so tired of it all. I think I get a good night's sleep but who knows as I try and make sure I don't sleep on my fistula even though it no longer works. That's another thing that is annoying.

[Bassetmommer]

Boy, did you guys get it right.... dialysis is like an out of body experience and I do not like the feeling. Although I can set up my machine, do my lines and even now cannulate myself, it is like a bad dream I am in. I want to wake up and see it was all just a dream. Remember Bill Murray in Groundhog Day? I am not even at 4 months.

Horsie, my little Pony...have them check your iron. Are you very anemic? I am a big girl, lots of padding, but when I am anemic, I get very cold. Dialysis strips iron out of you, and you probably need to have it replaced. They can do that right through the machine or a transfusion. I just had one on Monday.

When you get like that, you are smart to consume warm fluids. Warm from the inside. One time, my machine had a power failure and we had to reboot the dialysate maker (Pure Flow) NO one told us that the temperature needed to be reset. So I went through a whole treatment with it at the lowest setting. I was shaking so hard and I had no idea why I was so cold. It was set to 10 and they want it set to 18. Brrrr. Took me all day to warm up. Lots of hot tea and broth.

Check your labs for iron, ferritin and transfer rate

[horsie63 in reply to Bassetmommer]

I had been getting iron but my levels came up and I’m not right now. I’m a little bitty thing…no insulation so I’m cold a lot.

[Beachgirl32]

horsie sorry you are having a hard time . Sorry you are so cold have you try wearing a hat I know they say when the head is cover suppose to help with chills . I would defibeky bring a thermos with hot stuff .

Someone ask me the other day don’t I feel bettter doing dialysis . I really don’t have renew energy I just know I have to do it each day I wish I felt like I was refresh but I don’t I don’t know how I would be if I dint have it. Right now it just a treatment for my disease I must do.

[Ziggydoodah in reply to Beachgirl32]

Yeah i keep saying that to my husband. Just wish I could wake up even just one morning and feel refreshed. I've forgotten what that feels like. Sometimes dialysis feels like a mobile phone being charged. You get enough charge to do the basic things but not enough to play the fancy games or blast the loud music 🤪🤪🤪🤪

[Bassetmommer in reply to Ziggydoodah]

Ziggy and Beach,,,my Nephrologist keeps saying, "you will feel better with dialysis.'" Well first off, I did not feel bad without it. And NO, I do not feel better. I feel ok somedays, and someday drained. And last night the frigging cramps were back. I did not have dialysis yesterday, but I had an iron infusion the day before and dialysis. I am at my wits end with these cramps. Only happen at night and after I fall asleep.

[horsie63 in reply to Bassetmommer]

Aren't these effects wonderful...sarcastically said. I wish I could help but so far no cramps here. And you said you don't have fluid pulled. Does the saline help? Maybe after iron or whatever you have done you could add saline? I can ask my ultra friends what they do for cramps as I know some get them during a run.

[Bassetmommer in reply to horsie63]

Yes, today I gave myself 400 ml during treatment. It is tricky because if I do it too fast or too much it sets off alarms. I noticed today I was down on my weight before treatment and it was back to where I am normally after treatment. Wack-a-Mole ...... We will see tonight how I feel. Sometimes, I wonder if I should have not started dialysis at all....

[horsie63 in reply to Bassetmommer]

I know exactly how you feel. This is all so much a guessing game, even in center.

Every Tues now since I only go Tues and Sat they do a kt/V and it continues to be over 2. I think it makes them upset that I'm only doing 2 days. But hey it's my life and not theirs so the can just screw it. I know one nurse/tech isn't happy with the catheter so I'll make sure she stays away from me from now on. I'm afraid what her sticks might be like.

If I'd stop having surgery which screws with my memory I might look into home hemo but it seems so hard with my memory and I'd rather not. Right now I'm praying to get back active on the list and hopefully a problem free kidney (Jayhawker you've been through the wringer).

[Bassetmommer in reply to horsie63]

Horsie, curious what your level was..... I know you said over 2.... Mine is 3.2.

[horsie63 in reply to Bassetmommer]

Last they checked last week it was 2.14 and seems to be holding at that. I'll ask on Sat what the Tues value was.

[Bassetmommer in reply to horsie63]

Just something to think about, Home hemo is much gentler on the body. You control the flow rate, which is lower and gentler than in center. That was another reason I did it.

[horsie63 in reply to Bassetmommer]

What is your flow rate? Mine is 350. While I don't control the machine I do watch all of the values and ask why they are set where they are. Do you ever use heparin? The neph asked if I was allergic to it, since I've never used it I have no clue. I need to find out more. I'm rather nosy about what's going on.

[Bassetmommer in reply to horsie63]

My flow rate is 400. I am on only for two hours. How long are you on? Heparin is used when you start clotting. It thins your blood. I was on for a different reason, but not for anything with dialysis. They inject it right into the machine in one of the med ports while you are on. Or at least that is what I think. Not sure about in center.

[horsie63 in reply to Bassetmommer]

My flow rate is only 350 and since I'm only 2 days they moved me to 3 hours. I know it's only 15 min more than the 2:45 I was doing on 3 days but it seems longer.

I just got a call from the vascular surgeon's office....they will be doing an AV Graft on Apr 1. She said they'd probably put it in my upper arm whereas the fistula is in my elbow area...so more scars to add to the impressive collection I have.

[horsie63 in reply to Beachgirl32]

I do wear a hat, have 2 blankets and have them turn the temp on the machine to 36. That day was just weird as I hadn't been that cold in a long time. And outside temp was 80.

As to feeling better that's hard to say....I've felt way better in the past and I don't really feel awful, most days are just moving along. I go to work, I come home, I sleep, and then repeat except for dialysis days then I go there, come home and work from home. My life right now is a lot of rinse and repeat. Every now and then I have surgery to break things up. Like you said a treatment I have to do.

[Ziggydoodah]

Just make sure it's not an infection. Keep an eye on any other symptoms. Hope you feel better soon x

[horsie63 in reply to Ziggydoodah]

Luckily I warmed up after eating and drinking the coffee and I feel "normal" again.

[RhenDutchess123 in reply to horsie63]

Have you ever tried a weighted blanket ?...I also get cold and this helps me alot and it is also soothing...

[29hupp]

I wear a battery heated vest that I bought on Amazon and it really keeps me warm. I got a vest instead of a full coat because of access to the fistula. To composate for that I have a heavy long sleeve shirt and had a seamstress sew in a zipper on the fistula side sleeve so now that small area is the only part of my arm that is exposed. In addition I wear a hat plus a cotton glove on my fistula side hand and tuck the the other had under a blanket. Just suggestions, but I was always cold too and all of these tricks solved the problem. Good luck.

[horsie63]

Thanks for all the tips. I do have hoodies with zippers down the arm for when my fistula is usable. Right now I'm still using my CVC so I'm tucked under the blankets with only my face out. What happened Tues was unusual and hopefully won't repeat on Sat, but we'll see. I'll look into the weighted blanket although the one I have is pretty heavy. Stay tuned folks for more of the "what the hell is next"

[Irelandy]

Sounds like you had the rigors. I've experienced it twice and your symptoms fit.

[horsie63 in reply to Irelandy]

I've never heard of that. What is it?

[StillVertical]

Lots of good advice up above. I run 36.5. I also run at 350, on rare occasions 400, it's dictated by what size needles they use. I run 16 gauge normally, sometimes they screw up and put in 14's. It's easy to tell now, the needle butterflies are green. If I don't see that color when I sit down, I tell them drop to 16 gauge.

I have seen electric blankets used, I have seen high dollar goose down sleeping bags used, even some that were modified like a body suit. I'm upon the Northern Border, so its always cold here, but most people in dialysis use a heated battery operated vest, they can be had for 100 bucks or less. Personally, I just wear a silk t shirt, polartec 300 vest and a dialsysis jacket with Zip arms. I also use a fat merino wool blanket and wear deer skin insulated gloves lol.

Don't forget, if you still pee alot (I do not), bring in some hot tea in quality thermos double wall, whatever flavor you like, don't go crazy with the amount though. Perhaps a mild green tea.

Care and luck as always,

[horsie63 in reply to StillVertical]

Those are wonderful ideas. I'd seen the goose sleeping bag idea but don't want to shell out the $$$ for something only used rarely. I do have silk underthings but since I still have the CVC it's hard to pull them down for access. I did pick up some fleece vests that I wear. I have some of the arm zipper hoodies that are really warm too.